Research On Caregivers of Mental Illness People

Relationship of Burden, Positive and Negative Experiences
and Quality Of Life among Caregivers of Psychiatric Patients
Project Report Submitted

In
Partial Fulfillment of the Requirement for the Award of
Master’s Degree in Psychology
By
Zahida Fayaz Bhat
Mudasir Majeed mir
Zarafshan Yousuf Khan
Rehana Rehman Bhat
Kayinat Lateef
Under the supervision of

Dr. Touseef Rizvi
Post Graduate Department of Psychology

University of Kashmir
Hazratbal, Srinagar (J&K) - 190006
Batch: 2016-18
Relationship of Burden, Positive and Negative Experiences
and Quality Of Life among Caregivers of Psychiatric Patients
Project Report Submitted

In
Partial Fulfillment of the Requirement for the Award of
Master’s Degree in Psychology
By
Zahida Fayaz Bhat
Mudasir Majeed mir
Zarafshan Yousuf Khan
Rehana Rehman Bhat
Kayinat Lateef
Supervisor Head of the Department

Dr. Touseef Rizvi Dr. Shawkat Ahmad Shah
Post Graduate Department of Psychology

University of Kashmir
Hazratbal, Srinagar (J&K) - 190006
Batch: 2016-18
DECLARATION
We the students of M.A., hereby declare that the project titled, “Relationship of
Burden, Positive and Negative experiences and Quality Of Life among
caregivers of psychiatric patients” which is submitted by us to the Department of
Psychology, University of Kashmir in partial fulfillment of the requirement for
the award of Master’s degree has not previously been submitted in part or full to
this university or elsewhere. This is to declare that this work is an original work
carried out by us.
NAME ROLL NO. SIGNATURE
ZAHIDA FAYAZ BHAT 16079418009 ___________________________
MUDASIR MAJEED ___________________________

16079418012
MIR
ZARAFSHAN YOUSUF ___________________________

16079418026
KHAN
REHANA REHMAN ___________________________

16079418029
BHAT
KAYINAT LATEEF 16079418042 ___________________________

DEPARTMENT OF PSYCHOLOGY
UNIVERSITY OF KASHMIR, SRINAGAR
NAAC ACCREDITED GRADE ‘A’
CERTIFICATE
On the basis of declaration submitted by the students, I hereby certify that the
project entitled, “Relationship of Burden, positive and Negative Experiences
and Quality of Life among Caregivers Of Psychiatric Patients” submitted in the
partial fulfillment of the requirement for the award of Master’s degree M.A in
Psychology is the original work carried out by the below mentioned students
under my supervision.
Zahida Fayaz Bhat 16079418009

Mudasir Majeed Mir 16079418012
Zarafshaan Yousuf Khan 16079418026

Rehana Rehman Bhat 16079418029
Kayinat Lateef 16079418042
Dr. Shawkat Ahmad Shah Dr. Touseef Rizvi

Head of the Department Supervisor
III
ACKNOWLEDGEMENT
In the name of Allah, the most gracious, the beneficent and the most merciful.
With the limitless humility, we would like to praise and thank Allah, the
Almighty and compassionate, who bestowed us with health, sense and courage
enough to go through this crucial junction.
First of all, we would like to express our deep sense of gratitude to our teacher,
guide and supervisor Dr.Touseef Rizvi for her consistent guidance, support and
thorough supervision during the entire project work. We also credit her guidance
with incorporating in us a sense of dedication, determination and confidence to
accomplish the desired goal.
We are grateful to the Head of the Department, Dr. Showkat Ahmad Shah for
his constant support and appreciation.
Our sincere thanks to our teachers Dr.Humera Shafi, Dr.Muzamil Kumar,

Mrs.Asma Nabi, Dr. Shams un Nisa, Mrs Urooj un Nisa, and Miss Mohsina.
Our efforts towards this research project have been possible only through the
sheer assistance of the dedicated technical staff.
We owe our sincere gratitude to all the respondents (caregivers of psychiatric

patients) who provided us with the information related to our study. We greatly
acknowledge their cooperation.
Zahida Fayaz Bhat

Mudasir Majeed Mir
Zarafshaan Yousuf Khan

Rehana Rehman Bhat
Kayinat Lateef
CONTENTS
PAGE NO.
CHAPTER 1: Introduction 1-14
CHAPTER 2: Literature Review 15-22
CHAPTER 3: Methodology 23-26
CHAPTER 4: Result and Interpretation 27-32
CONCLUSION 33-36
REFERENCES 37-53
APPENDICES 54-65
LIST OF TABLES
Title of the Table Page No

TABLE 1.1: The detailed sample description of caregivers 23
TABLE 1.2: The detailed sample description of psychiatric patients 24
TABLE 2.1: Presenting descriptive statistics for Burden among
27
caregivers of psychiatric patients
Range of scores showing different levels of Burden
TABLE 2.2 27
among caregivers of psychiatric patients
Frequency distribution on different levels of Burden
TABLE 2.3: 27
Presenting descriptive statistics for Positive and
TABLE 3.1: Negative experiences among Caregivers of psychiatric 27
patients
Range of scores showing different levels of Positive
TABLE 3.2: and Negative Experiences among caregivers of 28
psychiatric patients
Frequency distribution on different levels of Positive
TABLE 3.3: and Negative Experiences among caregivers of 28
Presenting descriptive statistics for Quality of Life
TABLE 4.1: 28
TABLE 4.2: Range of score showing Quality of Life among
29
caregivers of psychiatric patients
Frequency distribution of caregivers on different
TABLE 4.3: 29
levels Quality of Life
Correlation summary of dimensions of Quality of Life
TABLE 5.1: with Burden among caregivers of psychiatric patients. 30
Summary of Pearson’s correlation between Positive and

TABLE 5.2: Negative Experiences with Quality of Life among 30
caregivers of psychiatric patients.
TABLE 5.3: Comparison of mean scores of Burden, Positive and

Negative Experiences and Quality of Life among caregivers 31
of psychiatric patients with respect to their gender status
Comparison of mean scores of Burden, Positive
Experiences, Negative Experiences and Quality of Life
TABLE 5.4: 31
among caregivers of psychiatric patients with respect to
their area of residence
Comparison of mean scores of Burden, Positive
Experiences, Negative Experiences and Quality of Life
TABLE 5.5: 32
among caregivers of psychiatric patients with respect to
their marital status
Abstract
The aim of the present work was to study the relationship of Burden, Positive and
Negative Experiences and Quality of Life among the caregivers of psychiatric
patients. The sample was drawn using purposive sampling technique and the total
sample consisted of 100 caregivers of psychiatric patients. The sample was taken
from Institute of Mental Health and Neurosciences, Srinagar and Govt. Medical
College, Srinagar. The tools used for the study were: Zarit Burden interview
(ZBI-12), Experiences of Caregiving Inventory (ECI) and World Health
Organisation Quality of Life scale (WHO-QOL).The results of the study
indicated that there is significant negative correlation between Burden and
Quality of Life, significant positive correlation between Positive Experiences and
Quality of Life and significant negative correlation between Negative
Experiences and Quality of Life. However, significant difference was found in
caregivers of psychiatric patients with respect to their gender and marital status,
while as no significant difference was found among caregivers of psychiatric
patients with respect to their area of residence.
KEY WORDS: Burden, Positive Experiences, Negative Experiences and Quality

of Life.
Chapter 1 Introduction
Mental disorders comprise a broad range of problems, with different symptoms.

However, they are generally characterized by some combination of abnormal
thoughts, emotions, behaviour and relationships with others. Examples are
schizophrenia, bipolar disorder, depression, intellectual disabilities and disorders
due to drug abuse. Most mentally ill patients normally consult traditional healers
and the reasons for not attending health facilities still remains unclear (Ngoma,
Prince, & Mann, 2003). Beliefs regarding the cause of mental illness may be one of
the reasons for not seeking healthcare. Most family members view mental illness
not as disease, but as a curse; a product of both witchcraft and evil spirits of which
the patient himself is counted as the main contributor, (Kabir, Iliyasu, Abubakar, &
Aliyu, 2004). It is likely that mental illness is severely underreported resulting in
many untreated patients. However, in all cases, family members bear much of the
burden of the patient’s mental illness and this affects them psychologically and
socially.
The family plays a very vital role in the care of mentally ill patients. A caregiver
has been defined as a family member who has been living with the patient, and has
been closely involved in his or her activities of daily living, health care, and social
interaction for more than a year (Department of Health and Human Services,
2005). Caregiver is an individual who has the responsibility of meeting the
physical and psychological needs of the dependent patient. Psychiatric patients
need assistance or supervision in their daily activities and this often places a major
burden on their caregivers, thereby placing the caregiver at a great risk of mental
and physical health problems. The caregivers of psychiatric illness have been
found to suffer twice as much as those in general population, (Oldridge & Hughes,
1992).The burden is experienced not only by families who have the patient living
with them, but also by families where the patients are living far away. Though the
nature of problems is different, need for external support is felt by caregivers.
Caring for someone with a mental disorder can affect the dynamics of a family. It
takes up most of the carer’s time and energy. The family’s responsibility in
providing care for people with mental disorders has increased in the past three
decades. This has been mainly due to a trend towards community care and the de-
institutionalization of psychiatric patients (Magliano, Fiorillo, De Rosa,
Malangone, & Maj, 2005). Caregivers are typically family members, relatives and
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friends. Sometimes caregiving is done by those affiliated with religious

institutions. While caregiving is also done by paid workers such as nurses, social
workers, and counsellors, as this work is paid, it does not fall in the same category
(Magliano, Fiorillo, Malangone, De Rosa, & Maj, 2006).
Family members are the primary caregivers of persons with mental illnesses in
most of the nonwestern world. In India more than 90% of patients with chronic
mental illness live with their families (Thara, Padmavati, Kumar, and Srinivasan,
1998).The family caregivers plays multiple roles in care of persons with mental
illness, including day to day care , supervising medications, taking the patients to
the hospital and looking after the financial needs. The family caregiver also has to
bear with behavioral disturbances in the patient. Thus, the family caregiver
experiences considerable stress and burden, and needs help in coping with it. The
caregivers develop different kinds of coping strategies to deal with the burden. An
unhealthy coping style is likely to adversely affect the caregiving function. Hence,
it is important to take care of the needs of the family caregivers. The family
caregiver has remained a neglected lot, often ignored by the mental health
professionals. This key support system can’t be taken as for granted and ignored by
the mental health professionals.
Caregiving of patients with mental illness:
Caring is a fundamental issue in the treatment for Persons with Severe Mental
Disorder (PWSMD). The onset of a mental illness in any family is often, and
understandably, a time of turmoil. Most families are ill-prepared to deal with the
initial onset of severe mental disorder in their family member (Janardhana,
Raghunandan, Naidu, Saraswathi, and Seshan, 2015). Families generally have little
knowledge of mental illness, and find that they not only have to deal with the ups
and downs of illness but also need to deal with the stigma and attitudes in the
community. Caring for person with severe mental disorder can be a devastating
stressor in any family, regardless of its strengths and resources available for coping
with a family member with severe mental illness. The presence of the person with
severe mental illness, impacts family members in several ways, disrupts the family
functioning, affects the occupational and social functioning, and same been
reported extensively in the literature as burden of care. Both bipolar affective
disorder and schizophrenia are associated with a considerable degree of perceived
Page 2
burden by caregivers, (Baldassano, Chen, Zadbood, Pillow, and Norman,

2017).The family provides considerable amount of care for their mentally ill
relatives even though they experience burden). Families view caregiving as their
sole responsibility toward their offspring with mental illness. Research studies in
India have documented that the vast majority of Persons with Severe Mental
Disorders (PWSMD) live with their family members, who are required to provide
care and support for the extended periods of time, (Thara et al., 1998). Most of the
time the caregiver's efforts are neither recognized nor acknowledged and seen as
plentiful resources freely available for caring people with mental illness.
(Janardhana and Naidu, 2011).
In India, the majority of persons with severe mental illness stay with their families,
(Thara et al., 1998). Caregivers have a major role to play in the re-socialization,
vocational and social skills training of the Persons with Severe Mental Disorders
(PWSMD), not only because of close family ties that exist in these traditional
societies but also because developing countries lack rehabilitation professionals to
deliver these services. Care burden is exacerbated by issues of poverty and
illiteracy. Such burden manifests in reduced caregiver well-being, (Jungbauer &
Angermeyer, 2002) which admittedly depends in part on caregiver factors such as
caregiving style. In turn, as caregivers are less able to provide support to their ill
relatives, their relatives well-being and their ability to remain in the communities
suffer. It is well-researched and proved that community-based interventions fasters
the rehabilitation of Persons with Severe Mental Disorders (PWSMD), same led
developing and developed countries to invest more on community mental health
program rather than institutional care. The emergence of community-based
methods of care and the decrease in economic resources have led to a shift in the
responsibility for the care of the ill individual from the institution to the family.
The paucity of mental health care has resulted families to shoulder more
responsibilities of caring their mentally ill family member, whether it was by
choice, our cultural influence or due to the lack of facilities, it is difficult to
conclude, though there are some evidences to support that family involvement in
care was and continues to be a preference of families.
Page 3
Caregiver Burden
The stress of caregiving has been labelled as caregiver burden in the literature. The
concept was first introduced by (Chadda, 2014), as the negative impact of
caregiving on caregiver's mental health and quality-of-life. The caregiver burden
has been described as having two dimensions: objective and subjective (Schene,
1990). The objective burden refers to the tangible and observable effects of the
caregiving on the family such as disrupted family routines, constraints on family's
social and leisure activities and financial costs, whereas the subjective burden
includes the caregiver's negative appraisal of circumstances such as feelings of
loss, guilt, shame, and anger. The caregiver burden is a universal phenomenon,
reported from all over the world, including Europe, Africa, America, Middle East,
and Asia. Almost 80% of caregivers experience burden in the caregiving role
(Corrigan, Druss, & Perlick, 2014). Family members affected may include parents,
spouses, siblings, and children. It was initially reported with schizophrenia and
later with bipolar disorder (Maji, Sood, Sagar, & Khandelwal, 2012). Later, it has
been reported in caregivers of patients with obsessive compulsive disorder,
(Chadda, 2014), severe depression, dementias, neurotic disorders (Fleeson et al.,
2017), substance dependence and somatisation disorder (Nebhinani, Sarkar, Basu,
Gupta, & Mattoo, 2013).
The caregivers caring for their patient with mental illness feel stressed, anxious and
low, since the illness tends to be chronic and demanding. In the long run, there
may occur burnout and emotional exhaustion. The caregivers feel isolated from the
society, both due to restriction of their social and leisure activities, as well as the
social discrimination and stigma attached to the mental illnesses. Some caregivers
may need to look after more than one patient in the family.
A number of factors related to caregivers, patients, and illness determine the

caregiver burden. These include characteristics of the person with mental illness,
characteristics of caregivers, and relationship between them, time spent by the
caregiver with the patient and nature and severity of illness, (Kuipers, Onwumere,
& Bebbington, 2010). The caregiver burden may be seen in all stages of illness.
Sometimes, the caregivers have high hopes in the initial phases of illness, which
gradually go down. The burden has been reported to be seen with the complete
range of symptoms. Some authors have reported more burdens with positive
Page 4
symptoms, others with disorganized or disruptive behavior or the negative

symptoms (social withdrawal and lack of activity). In general, it is the poor
functioning of the patient due to symptoms, which leads to more severe burden.
Subjective burden
Subjective burden refers to the physical, psychological, social, and financial impact
on the caregiver caused by feelings and appraisals of the caregiving role. Some
caregivers may perceive the objective tasks of caregiving as being rewarding,
while others may perceive them to be quite stressful and negative. The
accumulation of subjective stressors, such as negative feelings of guilt about not
meeting the needs of their care receiver, produces subjective burden on the
caregiver. Subjective burden is one of the most important predicators for negative
outcomes of the care situation for the caregivers themselves as well as for the one
who requires care. Subjective burden describes the psychological reactions which
relatives experience, e.g. a feeling of loss, sadness, anxiety and embarrassment in
social situations, the stress of coping with disturbing behavior, and the frustration
caused by changing relationships (Kuipers et al., 2010). Grief may also be
involved. This may be grief for the loss of the person’s former personality,
achievements and contributions, as well as the loss of family lifestyle (Kuipers et
al., 2010).
Objective Burden
Objective burden is defined as the extent of disruption or changes in various

aspects of the caregivers’ life and household. It measures the disruption of the
caregiver’s life. The objective burden of informal caregiving refers to the amount
of time spent on caregivers, the caregiving tasks that are performed, and possible
financial problems, (Montgomery, Martin, Le Bars, & Pelletier, 1985). Caregiver
burden is the reaction to stressors that accumulate from caregiving duties, time
restrictions, and difficulties in providing care (Zarit et al., 1980). Within the
context of the caregiver-patient relationship, caregivers health, psychological well-
being, finances, and social life often are restricted (Montgomery et al., 1985).
Burden is a common predictor of physical and psychological well-being of both
the caregiver and care-recipient (Sutter, 2014). In general, caregivers often report
experiencing high levels of burden (Pinquart & Sörensen, 2003). Increased
Page 5
caregiving obligations often result in a loss of free time, friendships, and social
isolation. In a study of dementia caregivers, one third of participants reported
increased objective burden (i.e., time dependency), and a quarter reported high
developmental burden such as feeling left out of normal life experiences. Caregiver
burden has been positively associated with caregiver depression. Caregiving and
reduced perceived instrumental support experienced more burden (Wijngaart &
Felling, 2008).
Theories
Caregiver Burden in the Context of Stress Theory
The importance of distinguishing between objective and subjective burden is

highlighted when ‘caregiver burden’ is considered in context of the stress process.
Pearlin’s stress process model suggests that stressors and resources exist which
affect individuals’ well-being (Wasilewski, 2016). Within this model, primary
stressors, secondary stressors and mediators interact in a way which ultimately
impacts the individuals’ well-being outcomes. When applied to caregiving,
‘caregiver burden’ takes on the form of a primary stressor, which is affected by the
caregiver’s background and the caregiving context. In turn, as a primary stressor,
‘caregiver burden’ interacts with secondary stressors, which consist of role strains
and intra-psychic factors (i.e. self-esteem, mastery, etc.). The secondary stressors
influence outcomes such as depression and anxiety. In this model, the interaction
between the primary stressors, secondary stressors and outcomes is mediated by
coping strategies and social resources (Wasilewski, 2016).
Caregiver Burden in the Context of Role Theory
Role theory entails the idea that humans act in varying and predictable ways based
on the expectations and conditions of the social role they are assuming. The
scarcity hypothesis suggests that role overload and role conflict arise when time
and resources are limited and individuals do not agree on certain role expectations.
When individuals lack sufficient time and resources to fulfill the obligations
associated with each of their roles, ‘role overload’ ensues. Role conflict occurs
when the expectations of the various roles an individual holds become
incompatible. Role overload and role conflict are particularly important when
discussing women and adult children caregivers experience of burden. Research
Page 6
regarding the gendered nature of caregiving is prevalent and reveals that females
assume the caregiving role more often than males do. The gendered nature of
caregiving also extends to the types of caregiving tasks that are assumed. Male
caregivers report being regularly involved in providing instrumental supports such
as aiding in the completion of household tasks. In addition to this instrumental
support, female caregivers are more likely to provide emotional support, which
includes listening, sharing feelings, showing warmth and discussing problems
(Wasilewski, 2016). The provision of emotional support has been demonstrated to
have a greater psychological impact on caregivers (e.g. inducing stress) than
assisting with physical tasks. This generally translates into poorer well-being and
happiness for females as compared to males (Wasilewski, 2016).
Positive and Negative Experiences of Caregiving
Caregiving is also associated with a sense of satisfaction and pride that derives
from the care-related activity and provides a sense of purpose in the caring role
(Wijngaart & Felling, 2008). Various theoretical frameworks have been proposed
to understand the caregiving outcome. Of these, the predominant framework is that
of a stress appraisal model, according to which the outcome of the caregiving
stress on the caregiver is influenced by the stressor (i.e. care giving demands),
mediators (in the form of coping, social support, personality of the caregiver), and
the positive and negative appraisal of their care giving role (Pearlin, Mullan,
Semple, & Skaff, 1990), There is more literature on the negative impact of
caregiving and only a few studies have evaluated the positive aspects of
caregiving, (Quinn, Clare, McGuinness, & Woods, 2012). Positive aspects of the
caregiving experience (PACE) are considered a subjective event. Research
suggests that such positive aspects are not opposite to negative aspects, can be
experienced along with the negative caregiving outcomes, and bear a modest
correlation with the negative aspects of caregiving (Quinn et al., 2012). There is
marked heterogeneity in understanding the PACE. Most literature on the PACE is
in the form of qualitative studies. These qualitative studies suggest that various
authors have understood PACE in terms of emotional rewards as well as job
satisfaction related to feeling appreciated as a caregiver, personal growth, self-
respect, being more self-aware, increased faith and spiritual growth, a sense of
mastery or competency in the role of caregiving, improved relationships (careers
Page 7
described gains relating to companionship and simply being in the company of

their husband or wife), greater emotional closeness, increased intimacy in the
relationship, and reciprocity or the opportunity to give back to their loved one
leading to satisfaction, a sense of duty and expressed pride in being able to care for
their lifelong partners (Lloyd, Patterson, & Muers, 2016). In terms of the process
of caregiving, various positive aspects of caregiving noted across different studies
include acceptance of or coming to terms with the situation, practicing a positive
caregiving attitude, satisfaction of care giving, ‘hope’ or ‘meaning’, counting
blessings, or choosing to use humors to make a positive situation out of a negative
one, commitment to a relationship, creating opportunities for the care recipient to
engage in meaningful activities, and drawing strength from various sources in
order to remain positive (Lloyd et al., 2016).
The experience of caregiving is complex, and comprises both negative and positive
experiences. Caregivers also describe rewarding experiences, in addition to the
pain, including increased closeness in the family and better understanding of other
people's sufferings. Researchers have extensively examined risk factors associated
with caregiving and have suggested ways to enhance caregivers’ well-being
(Pinquart & Sörensen, 2003). Two issues, however, have not yet been adequately
addressed. First, most prior studies have focused on caregivers negative
experiences and overlooked the positive experiences associated with caregiving
(Walker, Pratt, & Eddy, 1995), probably based on the assumption that by reducing
negative experiences, caregivers can continue providing care. This line of thought
ignores the fact that caregiving also brings about positive experiences, which may
propel caregivers to continue their support. Caregivers may receive personal
gratification when they feel useful by caring for frail older adults (Raschick &
Ingersoll-Dayton, 2004), or they may view caregiving as a way to pay back for the
help they received from the care recipients in the past (Hill & Wolf, 2016).
Moreover, family members are expected to take care of each other. Providing care
to family members confirms social norms and generates social approval (Lee,
Netzer, & Coward, 1994). Because the decision to stay in the caregiver role is
likely to be affected by negative as well as positive caregiving experiences, it is
imperative to examine risk factors related to both types of experiences
simultaneously. Caregiving experiences vary by caregivers’ gender and their
Page 8
relationship to care recipients. When older adults need help, their spouses usually
are the first to provide care. Adult children generally step in when spouses are not
available. In either type of relationship, women are more likely than men to be
caregivers. Past studies have examined whether risk factors related to caregiving
experiences differ either by gender (Pinquart & Sörensen, 2006); (Bédard,
Chambers, Pedlar, Schulz, & Yee, 2000) or by relationship, (Li, Seltzer, &
Greenberg, 1997). Caregivers typically experience both negative and positive
feelings simultaneously. On the one hand, caregiving activities may interfere with
caregivers’ daily routines cause physical, emotional, and financial strain and
eventually exhaust their energy (Pinquart & Sörensen, 2003). On the other hand,
caregivers can acquire satisfaction from helping their family members (Marks,
Lambert, Choi, David, & Edgewood, 2018). Thus, to sustain family caregiving,
policy makers need to know not only how to decrease caregivers’ negative
experiences, but also how to increase their positive experiences.
Quality of life (QOL)
Quality of life (QOL) is defined as an individual’s perception of his position in the

life in the context of the culture and value systems in which he lives and in relation
to his goals, expectations, standard and concerns. It comprises different dimensions
such as an individual’s physical, emotional, psychological and social well-being,
level of independence, and environmental relationship. Quality of life, according to
the World Health Organizations (WHO) is an individual’s perception of his or her
own situation. However, this concept has gone through more definitions and
redefinitions and different clinical, functional and social variables have been
included. It is now the general consensus to perceive quality of life more
holistically, to include the satisfaction with life, and satisfaction with its particular
domains. It is now deemed acceptable to view quality of life as a fulfilment of
dimensions which are sensitive to adaptations (Wiley, Bridges, Griffiths, Pope, &
Bartlett, 2012). Studies have often shown that caregivers of patients of many
diseases or ailment generally have lower quality of life compared to non-caregivers
(Surender et al., 2016).
Caregivers of patients with mental illnesses have reported lower Quality of Life
compared to non-caregivers and caregivers of patients with other chronic illnesses
(S. Gupta, Isherwood, Jones, & Van Impe, 2015). The QOL of caregivers is
Page 9
important in reflecting the quality of care that is given to patients diagnosed with
mental illness to aid recovery or stability and can also affect the progress and
outcome of the patients. Caregivers of patients with mental illnesses have reported
higher incidences of heartburn, headache, depression and anxiety, sleep
difficulties, insomnia and the possibility of even leading to death. Caregivers have
also documented more stress, psychological issues, social isolation and family
conflicts (Choo et al., 2003). Three factors have been found to significantly impact
the quality of life of the caregivers-caregiving situation, caregiving factors and
environmental factors. Caregiving situation are variables pertaining to the disease.
Caregiving factors are variables defining the caregivers and environmental factors
include support from family members and the health care system. Lack of peer
support, lower self-perceived quality of life, caregiving for a patient with psychosis
and being female have been shown to be predictors of poor QOL among caregivers
(Sintayehu, Mulat, Yohannis, Adera, & Fekade, 2015).
The term Quality of Life overlaps but is not synonymous with a number of terms,
including well-being, social indicators, and way of life among others (Andrews,
1980). Many investigators in this area have adopted the phrase “level of well-
being” as one that seems to express the quality of life concept most succinctly.
However, the definition proposed by Rice (1984) is a somewhat broader one: “The
Quality of Life is the degree to which the experience of an individual’s life
satisfies that individual’s wants and needs” (both physical and psychological).
Much of the debate about how Quality of Life should be defined has centered
around subjective versus objective approaches. Rice further defines objective
quality of life (OQL) as the degree to which specified standards are met by the
objectively verifiable conditions, activities, and activity consequences of an
individual’s life. And subjective quality of life (SQL) as a set of affective beliefs
directed towards one’s life (Elyse W. Kerce 1992).
Theories:
The integrative Quality of Life Theory (IQOL)
Quality of life (QOL) means a good life and we believe that a good life is the same
as living a life with a high quality. The notion of a good life can be observed from
subjective to the objective, where this spectrum incorporates a number of existing
Page 10
quality of life theories. We call this spectrum the integrative quality-of-life (IQOL)
theory and discuss the following aspects in this theory: well-being, satisfaction
with life, happiness, meaning in life, the biological information system, realizing
life potential, fulfilment of needs, and objective factors. The IQOL theory is an
overall theory or meta-theory encompassing eight more factual theories in a
subjective-existential-objective spectrum. Quality of life (QOL) means a good life.
A good life is the same as living a life with a high quality. All great religions and
philosophies have a notion of a good life ranging from saying that a good life is
attained by practical codes of conduct to requests to engage in a certain positive
attitude to life or to search into the depths of your own being. Notions about a good
life are closely linked to the culture of which you are a part. When people in a
Western culture view a good life, the cultural conditioning makes them tend to
include happiness, fulfilment of needs, functioning in a social context, etc. These
notions can then be divided into three loosely separate groups, each concerned with
an aspect of a good life: (Ventegodt, Merrick, & Andersen, 2003).
Subjective Quality of Life
The subjective quality of life is how good a life each individual feels he or she has.
Each individual personally evaluates how he or she views things and his or her
feelings and notions. Whether an individual is content with life and happy are
aspects that reflect the subjective quality of life.
Existential Quality of Life
The existential quality of life means how good one’s life is at a deeper level. It is
assumed that the individual has a deeper nature that deserves to be respected and
that the individual can live in harmony with. We might think that a number of
needs in our biological nature have to be fulfilled, that these factors — such as
conditions of growth — must be optimized, or that we must all live life in
accordance with certain spiritual and religious ideals laid down by the nature of our
being.
Objective Quality of Life
The objective quality of life means how one’s life is perceived by the outside
world. This view is influenced by the culture in which people live. The objective
quality of life reveals itself in a person’s ability to adapt to the values of a culture
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and tells us little about that person’s life. Examples may be social status or the
status symbols one should have to be a good member of that culture. (Objective is
used here in the sense of non-subjective or objective facts). Non-subjective is
concerned with the external and easily established conditions of life that many
observers can rate identically.
Abraham Maslow’s theory of Quality of Life
In 1962, Abraham Maslow published his book Towards a Psychology of Being,

and established a theory of quality of life, which still is considered a consistent
theory of quality of life. Maslow based his theory for development towards
happiness and true being on the concept of human needs. He described his
approach as an existentialistic psychology of self-actualization, based on personal
growth. When we take more responsibility for our own life, we take more of the
good qualities that we have into use, and we become more free, powerful, happy,
and healthy. It seems that Maslow’s concept of self-actualization can play an
important role in modern medicine. As most chronic diseases often do not
disappear in spite of the best biomedical treatments, it might be that the real change
our patients have for betterment is understanding and living the noble path of
personal development. The hidden potential for improving life really lies in
helping the patient to acknowledge that his or her lust for life, his or her needs, and
his or her wish to contribute, is really deep down in human existence one and the
same. But you will only find this hidden meaning of life if you scrutinize your own
life and existence closely enough, to come to know your innermost self (Ventegodt
et al., 2003).
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Purpose of the Study
Caring is a fundamental issue in the treatment for Persons with Severe Mental
Disorder. The onset of a mental illness in any family is often, and understandably,
a time of turmoil. Most families are ill-prepared to deal with the initial onset of
severe mental disorder in their family member. Families generally have little
knowledge of mental illness, and find that they not only have to deal with the ups
and downs of illness but also need to deal with the stigma and attitudes in the
community. Caring of person with severe mental disorder can be a devastating
stressor in any family, regardless of its strengths and resources available for coping
with a family member with severe mental illness. The presence of person with
severe mental illness, impacts family members in several ways, disrupts the family
functioning, affects the occupational and social functioning.
Caregiver is an individual who has the responsibility of meeting the physical and
psychological needs of the dependent patient. Family members are the primary
caregivers of persons with mental illnesses. 90% of patients with chronic mental
illness live with their families. The family caregivers plays multiple roles in care of
persons with mental illness, including day to day care , supervising medications,
taking the patients to the hospital and looking after their financial needs. The
family caregiver also has to bear with behavioural disturbances in the patient.
Thus, the family caregiver experiences considerable stress and burden, and needs
help in coping with it.
The stress of caregiving has been labelled as caregiver burden in the literature, as
the negative impact of caregiving on caregiver's mental health and quality-of-life.
The caregiver burden may be seen in all stages of illness. Caregiving is also
associated with a sense of satisfaction and pride that derives from the care-related
activity and provides a sense of purpose in the caring role. Research suggests that
such positive aspects are not opposite to Negative aspects, can be experienced
along with the Negative caregiving outcomes, and bear a modest correlation with
the Negative aspects of caregiving. Caregiving can impact the Quality of Life of
caregiver. Caregivers of patients with mental illnesses have reported lower QOL
compared to non-caregivers and caregivers of patients with other chronic illnesses.
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Keeping in view all these factors, the purpose of the present work is to study the
relationship of Burden, Positive and Negative experiences and Quality of Life
among caregivers of psychiatric patients and to determine whether there exists any
relationship between Burden and Quality of Life and between Positive and
Negative experiences and Quality of Life among caregivers of psychiatric patients.
And also, to study the difference in Burden, Positive and Negative experiences and
Quality of Life with respect to different demographic variables.
Objectives of the study
❖ To assess Burden, Positive and Negative Experiences and Quality of Life

among caregivers of psychiatric patients.
❖ To study relationship between Burden and Quality of Life among caregivers

of psychiatric patients.
❖ To study relationship between Positive and Negative experiences and Quality

of Life among caregivers of psychiatric patients.
❖ To study difference in Burden, Positive and Negative experiences and Quality

of Life among caregivers of psychiatric patients with respect to different socio
demographic characteristics.
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Chapter 2 Literature Review
A literature review or narrative review is a type of review article. A literature

review is a scholarly paper, which includes the current knowledge including
substantive findings, as well as theoretical and methodological contribution to a
particular topic.
Aggarwal et al. (2008) conducted a study entitled “Quality of Life and Burden in
caregivers of youth with Obsessive-Compulsive Disorder presenting for intensive
treatment”. The data was collected using self-rated 566 Questionnaire. A total
sample size of 72 caregivers was taken. Results revealed that component of
caregivers QOL correlated with caregiver-rated functional impairment, family
accommodation, youth externalizing behaviours and caregiver psychopathology.
Aspects of caregiver burden correlated with child OCD.
Imran, N., Bhatti, M.R., Haider, I., Azhar, L., Omar, A., and Sattar, (2010)
conducted a study entitled “Caring for the Caregivers: Mental Health, Family
Burden and Quality of Life of Caregivers of Patients with Mental illness”. A total
of 100 primary caregivers of psychiatric patients were included, they were
interviewed and administered Hospital Anxiety and Depression Scale (HADS),
family Burden interview Schedule and WHO-QOL BREF. The results of the study
showed that majority of primary caregivers of psychiatric patients were females
(74%) and spending more than 32 hours per week with the patient. (56%) high
proportion of caregivers scored above the cut-off of HADS for anxiety and
depression respectively (85% and 86% respectively). Caregivers of patients with
mental illness had impaired quality of life (QOL).
Narasipuram and Kasimahanti, (2012) conducted a study titled “Quality of Life

and perception among caregivers of person with mental illness”. Sample consisted
of 103 caregivers (Schizophrenia: 35, Affective Disorder: 36and Mental
Retardation: 32). The tools used were Zarit Burden Interview (ZBI) and World
Health Organization quality of life-BREF (WHOQOL-BREF). Results showed that
caregivers reported high burden and significantly reduced quality of life in the
domains of physical health, social relationship and environment of quality of life.
Gandhi and Thennarasu (2012) conducted a study entitled “Burden among

Caregivers of clients with depression”. For the purpose of data collection (BAS)
Burden Assessment Schedule and (BCS) Brief Cope Scale were used. The sample
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size of 30 was taken. The result According to Burden Assessment Schedule severe
burden accounted for 9% and moderate for 59.1%. The highest amount of burden
was seen in the areas of physical and mental health, spouse related, and in areas of
external support. The Brief Cope Scale showed that the most frequently used
coping styles were practicing religion, Active coping and planning. This study also
concluded that caregivers of the mentally ill individuals do undergo a lot of
burden.
Ampalam, Gunturu, and Padma (2012) conducted a study entitled “A comparative

study of Caregiver Burden in psychiatric illness”. For data collection, The
Montgomery Bogota caregiver Burden scale was used to assess the burden in terms
objective, subjective and demand burden. The sample size of 50 caregiver
members of psychiatric patients and chronic medical illness patients was taken.
The results showed that the caregiver burden scores in the caregivers of psychiatric
patients were significantly higher than that of medical illness. The caregiver
burden was found to increase with the duration of illness as well as with the age of
caregiver.
Ravi et al. (2013) conducted a study entitled “Burden among caregivers of

mentally-ill patients”. The data was collected using, A 20-item interviewer-
administered Burden Assessment Schedule to assess caregiver burden. The sample
size of 73 caregivers was taken. The results showed that the burden among
caregivers in general was lower than excepted, probably due to the interventions
made in the community based program.
Vasudeva, Sekhar, and Rao, (2013) conducted a study entitled “Caregivers Burden
of Patients with Schizophrenia and Bipolar Disorder”. The sample size includes 52
patients with schizophrenia and 51 patients with bipolar disorder. The burden
among the caregivers was assessed using burden assessment schedule. The results
of the study showed that caregivers of schizophrenia were group had significantly
higher burden score as compared to caregivers of bipolar disorder. Caregivers of
schizophrenia experienced significantly higher burden in areas of external support,
caregiver’s routine and other relations.
Sapouna et al. (2013) conducted a study entitled “Assessing the Burden of

caregivers of patients with mental disorders”. For the purpose of data caregivers of
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patients with major mental disorders were interviewed to test a modified version of
the IEQ-EU (Involvement evaluation questionnaire- European Language). The
sample size of 230 was taken .The result showed that most caregivers were female
(83%) mainly mothers living with the patient (80%), with quite high level of
burden. The majority of caregivers were worried about a patient’s future and his or
her financial status.
Saleh, Gomaa, Al-Jamal, El-Hadidy, and Aboul-Ezz, (2013) conducted a study

entitled “Psychosocial Burden on informal caregivers of patients with bipolar
mood disorder”. For the purpose of data collection Caregiver strain index,
Caregiver self–Assessment Questionnaire to measure the degree of burden,
Hamilton Anxiety Rating Scale, and Hamilton depression rating scale were used.
Results of the study found a significant burden on caregivers of bipolar mood
disorder patients of the severe type, with and without psychotic features. In
addition, caregivers of bipolar mood disorder patients of the severe type, without
psychotic features were found to have significant burden.
Kaushik, P. and Bhatia, (2013) conducted a study titled “Burden and Quality of
Life in Spouses of Patients with Schizophrenia and Bipolar Disorder”. The sample
consisted of 19 caregivers where (9 spouses-5 male and 4 female of chronic
schizophrenia patients) and (10 spouses-5 male and 5 female of bipolar patients).
The tools used were Burden Assessment Schedule (BAS) and World Health
Organization Quality of Life (WHOQOL-BREF) and were individually
administrated on each spouse. Results showed that 70% of the caregivers of
bipolar patients were male and 30% were females, while in caregivers of
schizophrenia group, 44.4% were male and 55.5% were females. The analysis of
the areas of burden further revealed that the gender of spouses contributed
significantly to the burden and burden was higher in females which led to poorer
quality of life.
Kate, Grover, Kulhara, and Nehra, (2013) conducted a study titled “Relationship of
Caregiver Burden with Coping Strategies, Social Support, Psychological
Morbidity, and Quality of Life in the Caregivers Of Schizophrenia”. The study
included 100 caregivers of schizophrenia patients. The data was collected by using,
Involvement Evaluation Questionnaire (IEQ). Results showed that Caregiving
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burden, especially tension is associated with use of maladaptive coping strategies,

poor quality of life and higher level of psychological morbidity in caregivers.
Settineri, Rizzo, Liotta, and Mento (2014) conducted a study entitled “Caregivers
Burden and Quality of Life”. The research tools used were Caregiver Burden
Inventory (CBI) and The Quality of Life Index (QOL-I). The sample consisted of
294 caregivers, out of which 206 were females and 88 were males. Results showed
that both the burden and the quality of life are significantly worse for caregivers
who care for patients with both physical and mental disease. In fact, comparing
only physical disease vs. mental illness, with t- test, it emerges a single difference;
the emotional burden is greater in the case of mental disorders.
College, Vidyapeeth, Sachin, Suresh, and Ravindra (2014) conducted a study

entitled “A descriptive study to assess Burden among family caregivers of mentally
ill clients”. For the purpose of data collection Socio-demographic Questionnaire
and caregiver burden scale was used. The samples were selected according to the
inclusion and exclusion criteria. The sample size for the present study is 60 family
caregivers. The result showed that the level of burden of family caregivers
regarding the care of mentally ill clients found that early (45%) of subject were
belong to mild burden. Minority of family caregivers (13.3%) belongs to moderate
burden. Remaining caretakers 9 (15%) belongs to severe burden and (15%)
belongs to no burden. The finding of the study state that, there is no significant
association between level of burden of family and caregivers.
Kaur (2014) conducted a study titled “Caregiving Burden and Social Support
among Caregivers of Psychiatric Patients”. The sample of 100 caregivers of
schizophrenia was taken with purposive sampling technique. The structured self-
report tools including a rating scale to assess social support were administered to
the caregivers of schizophrenic patients to collect the data. The results showed that
the caregiver burden and social support are negatively correlated and majority of
caregivers (50%) of schizophrenic patients suffer from severe and moderate level
of caregiving burden. However most of the caregivers (62%) of schizophrenic
patients have low acuity of social support. The level of burden experienced was
significantly associated with duration of illness and gender.
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Winahyu, Hemchayat, and Charoensuk, (2015) conducted a study titled “Factors

Affecting Quality of Life among Family Caregivers of Patients with
Schizophrenia”. Sample consisted of 137 family caregivers of patients with
schizophrenia. The tools used were Multidimensional Scale of perceived social
support, burden assessment schedule, perceived control of symptom scale and
Schizophrenia Caregivers Quality of life. Results of the study revealed that
caregiver burden negatively affected the quality of life (QOL), though employment
status and perceived social support positively affected quality of life among family
caregivers taking care of patients with schizophrenia, while gender, period of being
a caregiver, education, health status, and perceived control of symptoms were not
significant factors.
Lynch (2015) conducted a study entitled the family caregiver experience-

examining the Positive and Negative aspects of compassion fatigue as caregiving
outcomes. For the purpose of data collection Demographic questionnaire,
Caregiver Burden interview, Brief COPE inventory and Professional Quality of
Life (Pro. QOL) was used. The sample size of 168 family caregivers was taken.
The result revealed that the majority of participants (71%) reported high levels of
caregiver burden, Moderate to low levels of the compassion fatigue.
Gupta, Solanki, Koolwal, and Gehlot, (2015) conducted a study entitled

“Psychological Wellbeing and Burden in Caregivers of Patients with
Schizophrenia”. The data was collected using Burden assessment schedule and
psychological general well-being index. The study sample used 100 patients with a
diagnosis of schizophrenia and their caregivers’. The results showed that 80% of
the caregivers experienced moderate levels of burden. The burden was higher
among older caregivers and spouses. Psychological well-being was low in older
caregivers and those with lower educational status, and higher in siblings. A strong
negative correlation was found between burden and psychological well- being.
Srivastava, Tripathi, Tiwari, Singh, and Tripathi, (2016) conducted a study entitled
“Caregiver Burden and Quality of life of key caregivers of patient with dementia”.
The data was collected using Zarit Burden interview and World health
Organization (QOL-BREF). The sample size of 24 dementia key caregiver patients
was taken. The results showed that all key caregivers felt mild to moderate level of
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burden, gender wise significant difference was found on burden area of

expectation, a negative correlation was found between burden and quality of life.
Ndikuno, Namutebi, Kuteesa, Mukunya, and Olwits (2016) conducted study

entitled “Quality of Life of caregivers of patients diagnosed with severe mental
illness at the national referral hospital in Uganda”. For data collection a pretested
tool with two parts; a socio-demographic part and a Validated WHOQOL-BREF
was used .The sample size of 300 participants was taken. The result revealed that
QOL of caregivers for patients diagnosed with mental illness is generally poor due
to the added the responsibilities and occupation of time, energy and attention.
Bowman, Alvarez-Jimenez, Wade, Howie, and McGorry (2017) conducted a study

titled “The Positive and Negative experiences of caregiving for siblings of young
people with first episode psychosis’’ Experiences of Caregiving Inventory (ECI)
scale of positive and negative experiences were used. The sample of 157 siblings
in the first 18 months of their brother and sisters treatment for first episode
psychosis family intervention psychosis (FEP) was taken. The results revealed that
older brothers reported the lowest score for negative experience in caregiving and
younger sisters reported the highest Negative experiences in caregiving resulted in
less warmth within the sibling relationship and impacted negatively upon their
quality of life. Suicide attempts and a history of violence resulted in higher
caregiving burden for siblings.
Swain, Behura, and Dash, (2017) conducted a study titled “A Comparative Study
of Family Burden and Quality of Life between Caregivers of Schizophrenia and
Dementia Patients”. The sample consisted of 128 caregivers (64 caregivers of each
groups). Data was collected using World Health Organization Quality Of Life
(WHOQOL-BREF) and Family Burden Interview schedule. Result statistical
significant differences were found in the area of financial burden, disruptions of
family routine activities, family leisure and family interaction between dementia
and schizophrenia caregivers. Whereas there was no statistical significant
difference found in different domains of quality of life between these two groups
of caregivers. There were significant negative correlations found between family
burden and psychological, social relationship and environment domains of quality
of life.
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Alzahrani, Fallata, Alabdulwahab, Alsafi, and Bashawri, (2017) conducted a study

entitled “Assessment of the burden on caregivers of patients with mental
disorders”. For the purpose of data (IEQ) Involvement Evaluation Questionnaire
was used .The sample size of 377 caregivers were taken. The result showed that
Caring for People with mental illness is burdensome for their caregivers. The
magnitude of burden is potentially augmented by factors related to the patients and
household these factors should be considered when planning for preparing
caregivers to cope with people with mental illness.
Sharma, Sharma, and Pradhan, (2017) conducted a study “Assessing Caregiver

Burden in Caregivers of Patients With schizophrenia and Bipolar Affective
disorder”. For the purpose of data collection self-designed Performa was used to
collect the socio-demographic details of the caregivers. Modified caregiver strain
index was used to assess the overall stress. Beck’s depression inventory and beck’s
anxiety inventory was used to assess depression and anxiety respectively. The
sample of 100 caregivers was used, 50 each of schizophrenia and bipolar affective
disorder. Results revealed Seventy-two percent of caregivers were found to have
higher level of stress 25% had depression and anxiety related problems. Caregivers
of both groups experienced similar level of stress.
Bansal, Arora, and Garg, (2017) conducted a study entitled “Caregiver Burden
among people caring for patients with schizophrenia”. A sample size of 34 was
taken who were primary caregivers of schizophrenia patients. For the purpose of
data collection zarit burden interview and PANSS scales were used. The results
showed that the majority of caregiver’s experienced severe burden (52.9%),
(26.4%) caregivers had reported moderate burden.
Jeyagurunathan et al., (2017) conducted a study entitled “Psychological Status and

Quality of Life among primary caregivers of individuals with mental illness”. For
the purpose of data collection WHOQOL, General Anxiety Disorder-7(GAD-7),
and Patient health questionnaire-9 (PHQ-9) scales were used. A total of 350
primary caregivers were included in the study. The results showed that 18.3% of
primary caregivers had symptoms of depression while 12.7% had symptoms of
anxiety. Those with symptoms of depression were significantly associated with
low quality of life across all four domains of Quality of life whereas symptoms of
anxiety were significantly associated with low Quality of life in the social domain.
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Stanley, Balakrishnan, and Ilangovan, (2017) conducted a study entitled

“Psychological distress, Perceived Burden and Quality of Life in caregivers of
persons with schizophrenia”. The results of the study showed that high perceived
burden and lower Quality of life were seen in the majority of caregivers. They also
manifested high levels of anxiety and depression. Patient characteristics such as
age, gender, symptoms and duration of illness did not influence the perceived
burden of caregivers, while positive and negative symptoms and the duration of
illness were correlated with their QOL.
Neong and Rashid, (2018) conducted a study entitled “Quality of Life of caregivers
of patients with psychiatric illness”. The target populations were the primary
caregivers of patients on psychiatric follow up. The sample size of total 221
randomly recruited patients and their caregivers were taken. These caregivers were
interviewed face-to-face using WHOQOL-BREF questionnaire to evaluate their
quality of life. Lower level of education and Chinese race were significantly
associated with the poor Quality of life. Whereas, the patient’s Chinese race and
profession were significantly associated with the caregiver’s quality of life.
Ribé et al. (2018) conducted a study entitled “Quality of Life in family of

Schizophrenia patients in Spain: caregiver characteristics, care giving burden,
family functioning, and social and professional support”. For the purpose of data
collection World health organization quality of life-BREF (WHOQOL-BREF), and
Zarit scale was used. The sample size 100 caregivers were taken .The results
showed that there is significant association between the caregiver’s burden and
their QOL.
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Chapter 3 Methodology
Research methodology is the specific procedures or techniques used to identify,

select, process, and analyse information about a topic. Research methodology is a
science of studying how research is to be carried out and the way to find out
the result of given research problem on a specific matter. Methodology is a
research decision making process in which a researcher sets the appropriate
design , modes or techniques of sample, instruments for measurement, testing,
experiments, observation, computer programming, and the suitable methods for
data analysis.
Sample
In present study the sample consisted of 100 caregivers of psychiatric patients.

Through purposive sampling technique, the sample was collected from the Institute
of Mental Health and Neuroscience- Kashmir (IMHANS-K) and Government
Medical College (GMC) Srinagar.
Table1.1: The detailed sample description of caregivers is given in the table

below
Demographics Groups Frequency %age Total

Gender Male 61 61 100
Female 39 39
Residence Rural 68 68
Urban 32 32 100
Marital status Married 55 55
Unmarried 45 45 100
Literate 62 62
Education Illiterate 38 38 100
Physical illness Illness 11 11
None 89 89 100
6 months to 1 year 35 35
Duration of
2 years to 4 years 42 42
caregiving 100
Monthly income 4000 to 20000 89 89
21000 to 50000 9 9 100
51000 to 1 lac 3 3
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Table 1.2: The detailed sample description of psychiatric patients is given in

the table below.
Demographics Groups Frequency %age total

Male 48 48
Gender 100
Female 52 52
Residence Rural 68 68
100
Urban 32 32
Marital status Married 55 55
100
Unmarried 45 45
Education Literate 36 36
100
Illiterate 64 64
6months to 1Years 35 35
Duration of 2years to 4years 42 42
illness 5years to 7years 17 17
8years to 10 years 7 7 100
Tool Description
The following tools were used to gather the responses from subjects.
1. Zarit Burden Interview (ZBI-12) (Beaded et al. (2001) used to assess the
caregiver burden among caregivers of psychiatric patients. Zarit Burden Interview
(ZBI-12) is a short form 12 item scale. Each question is scored in five-point likert
scale from 0 to 4 (never to nearly always). 0= never, 1= rarely, 2= sometimes, 3=
quite frequently, and 4= nearly always. Total ZBI score: summation of 12 items.
Range of summed score is 0 to 48.
2. Experiences of Caregiving Inventory (ECI) (Szmukler et al., 1996) used to

assess the caregiving experience as perceived by the caregivers. It is a 66-item self-
report measure of the experience of caring for a relative with serious mental
illness. It identifies 10 independent dimensions in relatives’ appraisal of
caregiving: eight negative and two positive. The negative subscales include:
difficult behaviours (patient being moody, unpredictable); negative symptoms
(being withdrawn, uncommunicative); stigma (feeling the stigma of having a
mentally ill relative; how to explain patient’s illness to others); problems with
services (how health professionals do not take you seriously; finding out how
hospitals and mental health services work); effects on the family (how the patient
Page 24
gets on with other family members; how family members do not understand the
illness); loss (what sort of life the patient might have had; whether the patient will
ever get well); dependency (being able to do the things you want to do; patient’s
dependence on you); need for back-up (difficulty looking after money; setting
patient up in accommodation). The two positive subscales include positive
personal outcomes (I have learnt more about myself; I have contributed to others’
understanding of the illness) and good aspects of the relationship with the patient
(grown in strengths in coping with the illness; makes a valuable contribution in the
household). The items are rated on a 5 point Likert scale (0= never; 1= rarely; 2=
sometimes; 3= often; 4= nearly always). The negative and positive measures can
be summed to give two measures: total negative score (ECI-neg.) and total positive
score (ECI-pos.).
3. The World Health Organization Quality of Life Scale (WHOQOL-BREF,

1996) is a self-administered questionnaire. This WHOQOL-BREF instrument
comprises 26 items, which measures the following broad domains: Physical
Health, Psychological Health, Social Relationships, and Environmental Life
Satisfaction. The four domain scores denote an individual’s perception of quality
of life in each particular domain. Domain scores are scaled in a positive direction
(I.e. higher scores denote higher quality of life).There are three items in the scale
which are negatively scored.
Procedure
For data collection, the approval letters were taken from the department of
psychology. The researchers then approached the “Institute of Mental Health and
Neurosciences Srinagar (IMHANS) and Department of Psychiatry (G.M.C)
Srinagar and obtained the permission from the authorities of the respective
hospitals for interaction with caregivers of psychiatric patients. Before
administering the questionnaires, the rapport was established with them. They were
motivated verbally. They were assured their responses will be kept confidential
and will be used for research purpose only. The purpose of the study was made
clear to them. They were provided help where ever they needed.
Page 25
Data Analysis
The data was analysed using SPSS version 20.0. The frequencies of the three
variables: Burden, Positive and Negative experiences and Quality of Life were
computed to find the distribution of the sample in three ranges (low, medium and
high). Furthermore, the bivariate correlation was used to find correlation of
Burden, Positive and Negative Experiences with Physical Health, Psychological
Health, Social Relationships, Environmental Life Satisfaction and total Quality of
Life. Finally, t-test was used to find the differences between characteristics across
three variables
Page 26
Chapter 4 Results and Interpretation
Table 2.1: Presenting descriptive statistics for Burden among caregivers of

psychiatric patients (N=100)
Variables M SD LL –UL
Burden 21.71 8.49 3.00 – 42.00
Table 2.2: Range of scores showing different levels of Burden among

caregivers of psychiatric patients (N=100)
Variables Low Average High
Burden ≤13.22 13.23 – 30.2 ≥30.3
Table 2.3: Frequency distribution on different levels of Burden among

Variables Low levels Average High
f % f % f %
Burden 20 20 64 64 16 16
Table 3.1: Presenting descriptive statistics for Positive and Negative

experiences among Caregivers of psychiatric patients (N=100)
Variables M SD LL –UL
Positive Experiences 36.93 9.04 2.00 – 54.00
Negative Experiences 10.17 2.21 43.00 – 151.00
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Table 3.2: Range of scores showing different levels of Positive and Negative
Experiences among caregivers of psychiatric patients (N=100)
Positive Experiences ≤27.89 27.90 – 45.97 ≥45.98
Negative Experiences ≤79.74 79.75 – 125.32 ≥125.33
Table 3.3: Frequency distribution on different levels of Positive and Negative

Experiences among caregivers of psychiatric patients (N=100)
Low levels Average High

Variables
f % f % f %
Positive
13 13 69 69 18 18
Experiences
Negative
17 17 68 68 15 15
Experiences
Table 4.1: Presenting descriptive statistics for Quality of Life among

Variables M SD LL-UL
Physical Health 22.88 4.68 10.00 -31.00
Psychological health 19.27 4.35 9.00 – 27.00
Social relationships 10.17 2.25 3.00 – 15.00
Environment Life Satisfaction 25.16 4.57 14.00 – 34.00
Total Quality Of Life 77.50 13.15 45.00 – 99.00
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Table 4.2: Range of score showing Quality of Life among caregivers of

Physical Health ≤18.2 18.3 – 27.56 ≥27.56
Psychological health ≤ 14.92 14.93 – 23.62 ≥23.63
Social relationship ≤7.96 7.97 – 12.38 ≥12.39
Environmental Life Satisfaction ≤20.62 20.63 – 29.74 ≥29.75
Total Quality of life ≤64.35 64.36 – 90.65 ≥90.66
Table 4.3: Frequency distribution of caregivers on different levels Quality of

Life (N=100)
Variables Low Levels Average High
f % f % f %
Physical Health 42 42 58 58 0 0
Psychological Health 15 15 64 64 21 21
Social Relationships 13 13 76 76 11 11
Environment Life 17 17 64 64 19 19
Satisfaction
Total Quality of Life 17 17 68 68 15 15
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Table 5.1: Correlation summary of dimensions of Quality of Life with Burden

among caregivers of psychiatric patients.
Physical Psychological Social Environmental Total

Health Health relationship life satisfaction QOL
Burden -.59** -.64** -.43** -.41** -.64**
**= Sig. at .01 Level

The results revealed significant negative correlation between Burden and four dimensions
of Quality of Life; (Physical Health (-.59**), Psychological Health (-.64**, Social
Relationship (-.43**), Environmental Life Satisfaction (-.41**) and as well as with the
Total Quality of Life (-.64**)
Table 5.2: Summary of Pearson’s correlation between Positive and Negative

Experiences with Quality of Life among caregivers of psychiatric
patients.
Environmen
Physical Psychologica Social Total
tal life
Health l Health Relationship QOL
satisfaction
Positive
.36** .35** .36** .20* .38**
experiences
Negative
-.41** -.35** -.14* -.29** -.39**
experiences
*p = 0.05; **p = 0.01
The results revealed that the significant positive correlation was found between Positive
Experiences and four dimensions of Quality of Life; (Physical Health (.36**),
Psychological Health (.35**), Social Relationship (.36**), Environmental Life
Satisfactions (.20*), and as well as with the Total Quality of Life (.38**).
The results further revealed that the significant negative correlation found between
Negative Experiences and four dimensions of Quality of Life; (Physical Health (-.41**),
Psychological Health (-.35**), Social Relationships (-.14), Environmental Life
Satisfaction (-.29**), and as well as with Total Quality of Life (-.39*).
Page 30
Table 5.3: Comparison of mean scores of Burden, Positive and Negative Experiences
and Quality of Life among caregivers of psychiatric patients with respect
to their gender status (N=100).
Variables Gender N M SD Df t-test
Burden Male 61 19.96 8.20
98 2.58*
Female 39 24.30 8.14
Positive Experiences Male 61 38.78 7.24
98 2.65*
Female 39 34.00 10.77
Negative experiences Male 61 102.62 25.05
98 .078NS
Female 39 102.25 19.19
Quality of life Male 61 80.93 12.10
98 3.44*
Female 39 72.12 13.07
NS: not significance *= Sig. at .05 Level
The results revealed significant difference in Burden (2.58), Positive Experiences (2.65),
and Quality of Life (3.44) but in Negative Experiences (.078) no significant difference was
found.
Table 5.4: Comparison of mean scores of Burden, Positive Experiences, Negative

Experiences and Quality of Life among caregivers of psychiatric
patients with respect to their area of residence (N=100).
Variables Residence N M SD Df t-test
Rural 68 20.92 8.17

Burden 98 1.27NS
Urban 32 23.21 8.84
Positive Rural 68 37.55 8.94
98 1.02 NS
Experiences Urban 32 35.56 9.25
Negative Rural 68 103.11 23.10
98 .405 NS
experiences Urban 32 101.12 22.59
Quality of Rural 68 79.14 12.46
98 1.84 NS
Life Urban 32 74.00 14.06
NS: non significance
The results revealed that there is no difference in Burden (1.27), Positive Experiences
(1.02), Negative experiences (.40) and Quality of Life (1.84) of caregivers with respect to
their residential status.
Page 31
Table 5.5: Comparison of mean scores of Burden, Positive and Negative Experiences
and Quality of Life among caregivers of psychiatric patients with respect
to their marital status (N=100).
Marital
Variables N M SD Df t-test
status
Burden Married 55 23.80 8.47 98 2.91*
Unmarried 45 19.04 7.64
Positive Married 55 35.36 9.95 98 1.92NS
Experiences Unmarried 45 38.82 7.47
Negative Married 55 104.41 24.64 98 .93NS
experiences Unmarried 45 100.11 20.45
Quality of Married 55 74.07 14.21 98 2.99*
life Unmarried 45 81.08 10.42
NS: non significance*= Sig. at .05 Level
The results revealed that there is significant difference found in Burden (2.91, P= 0.05),
and Quality of Life (2.99, P= 0.05) among caregivers of psychiatric patients with respect
to their marital status. The results further revealed that no significant difference was found
in Positive Experiences (1.92) and Negative experiences (.93) among caregivers of
psychiatric patients with respect to their marital status.
Page 32
Conclusion
Conclusion
The present work was aimed to study the relationship of Burden, Positive and
Negative Experiences and Quality of Life among caregivers of psychiatric patients.
After following proper methodological and analysis procedures, the findings that
came to the forefront are presented as follows:
As far the dimensions of Quality of Life are concerned, in case of Physical Health,
42% scored low, 58% scored average and 0% scored high, in case of Psychological
Health, 15% scored low, 64% scored average and 21% scored high, in case of
Social Relationships, 13% scored low, 76% scored average and 11% scored high,
in case of Environmental Life Satisfaction, 17% scored low, 64% scored average
and 15% scored high.
In case of Burden, 20% scored low, 64% scored average and 16% scored high.
In case of Positive Experiences, 13% scored low, 69% scored average and 18%
scored high.
In case of Negative Experiences, 17% scored low, 68% scored average and 15%
scored high.
Discussion
The present work was aimed to study the relationship of Burden, Positive and
Negative Experiences with Quality of Life among caregivers of psychiatric
patients.
While analysing the relationship between Burden and Quality of Life, the results
showed that Burden has significant negative correlation with dimensions of
Quality of Life as well as with total Quality of Life .The results are in line with
majority of the past studies. For instance, Settineri, Rizzo, Liotta, and Mento
(2014) have highlighted significant negative correlation between Burden and
Quality of life. Similarly, Swain, Behura, and Dash, (2017) conducted a study
which highlighted significant negative correlation between Burden and dimensions
of Quality of life. Similarly, other studies have also shown a significant
relationship between the two variables I.e. Burden and Quality of Life. However,
there are also some studies that have shown an insignificant relationship between
the two variables, I.e. Burden and Quality of life. For instance, College,
Page 33
Conclusion
Vidyapeeth, Sachin, Suresh, and Ravindra (2014) conducted a study, the findings
of which state that, there is no significant association between level of Burden and
Quality of Life.
While analysing relationship between Positive Experiences and Quality of Life, the
results showed that there is significant positive correlation between the dimensions
of Quality of Life and Positive Experiences as well as with the total Quality of
Life. There are some past studies that support our results. For instance, S Grover,
Nehra, Malhotra, and Kate (2016) conducted a study which showed significant
positive correlation between Positive Experiences and Quality of Life. Another
study conducted by Hsiao and Van (2009) found significant positive correlation
between Positive Experiences and Quality of Life. While analysing relationship
between Negative Experiences and Quality of Life, results revealed that there is
significant negative correlation between dimensions of Quality of Life and
Negative Experiences.
While analysing the difference in Burden among caregivers with respect to their
gender significant difference was found. There are some Studies that support the
present study are Sapouna et al. (2013), Kaushik, and Bhatia (2013) which stated
that there is significant difference between gender and Burden, as female
caregivers experience much more burden than the male caregivers. However there
are other studies that contradict the present study. For instance, study conducted by
Winahyu, Hemchayat, and Charoensuk (2015) state that there is no significant
difference between the two variables I.e., Gender and Burden.
While analysing the difference in Positive Experiences among caregivers of

psychiatric patients with respect to their gender in the present study significant
difference was found. And while analysing the gender differences in Negative
Experiences no significant gender difference was found. However, significant
difference was found in Quality of Life on the basis of gender. A study conducted
by Imran, , Bhatti, M., Haider, Azhar, Omar, and Sattar, (2010) supports these
results. They found that majority of primary caregivers of psychiatric patients were
females (74%) and spending more than 32 hours per week with the patient had
impaired Quality of Life (QOL).
Page 34
Conclusion
While analysing the difference in Burden, Positive and Negative Experiences and
Quality of Life among caregivers of psychiatric patients with respect to their
residential status no significant difference was found. While analysing the
difference in Burden among caregivers of psychiatric patients with respect to their
marital status significant difference was found. While analysing the difference in
Positive and Negative Experiences among caregivers with respect to their marital
status no significant difference was found. While analysing the difference in
Quality of Life among caregivers with respect to their marital status significant
difference was found.
Limitations of the study
Limitations outline the parameters of the study and include some potential areas
where the study may fall short. Limitations section is a traditional nod to humility
and recognition that though the work is comprehensive, but not complete.
Limitations keep alive the scope for further research in the field. The present study
too felt short in various areas some of them are mentioned below.
1. The sample size was small N=100 which limits the generalizability of the
results.
2. Though standardized tools were used in the study but due to large number
of items in these tools respondents experienced fatigue, which may have
affected their responses.
3. Tools used were foreign which may have possibly affected the
psychometric properties of the scale.
4. The population of the study was sensitive which affected the process of
data collection.
5. The validity of the tools used was not ascertained as no pilot study was
conducted.
6. Keeping in view the nature of the target population, qualitative research

would have been more appropriate and much informative as compared to
quantitative study.
Page 35
Conclusion
Suggestions for future research
Research is an unending chain process because every study leaves behind its
shortcomings and makes room for future researchers to dwell in diverse ways and
contexts. Thus in consequences of the above limitations of the present study,
following suggestions have been put forth for further research in this domain.
1. In order to gain accurate and relevant information from the respondents,

culture sensitive tools should be developed.
2. Alternative research techniques should be used by future researchers to

authenticate the results.
3. Different variables should be introduced in the future studies on such

specific population in order to gain diverse information.
4. Short versions of the scales and questionnaires should be preferred by

future researchers.
More research needs to be carried out on the basis of present study in Kashmir with
certain considerations to improve the authenticity of the results for concerned
authorities.
Page 36
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Page 53
Appendices
Dear Respondent,
We are PG students from the Department of Psychology, University of Kashmir,

pursuing our research project for which we need your help. Please go through the
statements below and place a tick at the most appropriate option in the box. Your
information will be kept highly confidential and will be used for research purpose
only.
Caregiver information Patient information
Age: ___________ Age: ____________
Gender: ____________ Gender: __________
Relation with the patient: _____________ Type of illness: ____________
Duration of caregiving: ____________ Duration of illness: _________
Any physical illness: _______________ Education: ______________
Rural/urban: ________________
Education: _________________
Monthly income: _______________
Page 54
Appendices
Appendix B
Zarit Burden Interview (ZBI-12)

Never Rarely Sometimes Quite frequently Nearly always
‫کبھی نہیں‬ ‫بہت کم‬ ‫کبھی کبھی‬ ‫زیادہ تر‬ ‫تقریبا ً ہمیثہ‬
0 1 2 3 4
Do you feel…?
‫؟‬......‫کیا آپ محسوس کرتے ہیں‬
1. That because of the time you spend with
your relative you don’t have time for
yourself.
‫کہ اپنے رشتہ داروں کے ساتھ جو‬
‫ اُس وجہ سے‬، ‫وقت آپ گزارتے ہیں‬
‫آپ کے پاس اپنے آپ کے لیے وقت‬
‫نہیں ہے؟‬
2. Stressed between caring for your relative
and trying to meet other responsibilities
(work /family)?
‫کہ آ پ رشتہ داروں کا خیال رکھنے‬
)‫کنبہ سے وابستہ‬/‫اور اپنے ( کام‬
‫دوسرے فرائض پورا کرنے کے‬
‫درمیان خود تناؤ میں ہیں؟‬
3. Angry when you are around your relative?
‫کہ جب آپ اپنے رشتہ داروں کے‬
‫آس پاس ہوتے ہیں تو آپ غصہ ہو‬
‫جاتے ہیں؟‬
4. That your relatives currently affect your
relationship with family members or
friends in a negative way?
‫کہ اِ س وقت آپ کے رشتہ دار آپ‬
‫کے اپنے کنبے کے افراد یا دوستوں‬
‫سے تعلقات پر منفی اثر ڈال رہے‬
‫ہیں۔‬
5. Strained when you are around your
relative?
‫کہ جب آپ اپنے رشتہ داروں کے‬
‫آس پاس ہوتے ہیں تو آپ خود تناؤ‬
‫میں رہتے ہیں؟‬
6. That your health has suffered because of
your involvement with your relative?
‫کہ آپ کی اپنے رشتہ داروں کے‬
‫ساتھ وابستگی سے آپ کی صحت‬
‫متاثر ہوئی ہے؟‬
7. That you don’t have as much privacy as you
would like because of your relative?
‫کہ آپ کے رشتہ داروں کی وجہ‬
‫سے آپ کو ویسی خلوت میسر نہیں‬
‫ہے جیسی کہ آپ چاہیں گے؟‬
8. That your social life has suffered because
you are caring for your relative?
‫کہ آپ کا اپنے رشتہ داروں کا خیال‬
‫رکھنے کی‬
‫وجہ سے آ پ کی سماجی زندگی‬
‫متاثر ہوئی ہے؟‬
9. That you have lost control of your life since
your relatives’ illness?
Page 55
‫‪Appendices‬‬
‫کہ آپ کے رشتہ داروں کی بیماری‬

‫کی وجہ سے آپ نے اپنی زندگی کا‬
‫کھو دیا ہے؟‬
‫‪10. Uncertain about what to do about your‬‬
‫?‪relative‬‬
‫آپ فیصلہ نہیں کرپا رہے ہیں کہ آپ‬
‫اپنے رشتہ داروں کے لیے کیا‬
‫کریں؟‬
‫‪11. You should be doing more for your‬‬
‫کہ آپ کو اپنے رشتہ داروں کے‬
‫لیے اور زیادہ کچھ کرنا چاہیے؟‬
‫‪12. You could do a better job in caring for your‬‬
‫کہ آپ انپے رشتہ داروں کا خیال‬
‫رکھنے کی خاطر اور بہتر کام کر‬
‫سکتے ہیں؟‬
‫‪Page 56‬‬
Appendices
APPENDIX C
Experiences of caregiving inventory (ECI)
Never Rarely Sometimes Often Nearly Always

‫تقریبا ً ہمیشہ عام طور پر کبھی کبھی کبھی کبھار کبھی نہیں‬
0 1 2 3 4
1. I have become more understanding of others
with problems
‫میں دوسروں کو زیادہ سمجھنے لگا ہوں‬
‫جنہیں پریشانیاں ہوتی ہیں‬
2. I feel useful in my relationship with him/her
‫میں اُس کے ساتھ اپنے رشتے میں خو د کو‬
‫بامعنی سمجھتا ہوں‬
3. I have contributed to his /her wellbeing
‫میں نے اُس کی بہتری میں حصہ ادا کیا ہے۔‬
4. I have discovered strengths in myself
‫میں نے خود میں مضبوطی دریافت کی ہے۔‬
5. I have met helpful people
‫مال ہوں‬/ ‫میں مددگار افراد سے ملی‬
6. That he/she is good company
‫کہ اُس کی مصاحبت اچھی ہے۔‬
7. I have become more confident in dealing with

others
‫مجھ میں دوسروں کے ساتھ معاملہ کرنے‬
‫میں زیادہ اعتماد آیا ہے‬
8. That he/she has shown strengths in coping with
his/her illness
‫کہ اُس نے اپنی بیماری پر حاوی ہونے میں‬
‫مضبوطی کا مظاہرہ کیا ہے۔‬
9. I have contributed to others understanding of
the illness
‫میں نے دوسروں کو اس بیماری کے بارے‬
‫میں سمجھانے میں حصہ ادا کیا ہے۔‬
10. I share some of his /her interests
‫ہماری کچھ دلچسپیاں مشترکہ ہیں‬
11. I have learnt more about myself
‫میں نے اپنے آپ کے بارے میں زیادہ جانا۔‬
12. I have become closer to some of my family
‫میں اپنے کنبہ کے کچھ افراد سے زیادہ‬
‫نزدیک ہوگیا۔‬
13. That he /she makes valuable contribution to the
household
‫کرتا‬/ ‫کہ وہ گھر میں بہتر حصہ ادا کرتی‬
‫ہے۔‬
14. I have become closer to friends
‫میں دوستوں کے قریب تر ہوگیا ہوں۔‬
15 Your covering up his /her illness
‫آپ کا اُس کی بیماری کو چھپا کر رکھنا‬
Page 57
Appendices
16 Feeling unable to tell anyone about his/her

illness
‫آ پ کسی کو اُس کی بیماری کے بارے میں‬
‫نہیں کہہ پا رہے ہیں۔‬
17 His or her difficulty looking after money
‫اُس کا پیسے کا انتظام کرنے میں پریشانی آنا۔‬
18 Having to support her
‫اُسے مدد کرنا‬
19 What sort of life he/she might have had
‫اُس کی زندگی کس طرح کی ہو سکتی تھی۔‬
20 His/her risk of committing suicide
‫اُس کا خود کشی کرنے کا احتمال۔‬
21 Being unable to do the things you want to do
‫ایسی چیزیں نہ کر پانا جو کہ آپ کرنا چاہتے‬
‫تھے‬
22 How health professionals do not take you
seriously
‫صحت کے ماہرین کس طرح آپ کو غیر‬
‫سنجیدگی سے لیتے تھے۔‬
23 His/her dependence on you
‫اُس کا آپ پر انحصار‬
24 Helping him/her to fill in the day
‫دن گزارنے میں اُس کی مدد کرنا‬
25 The effect on your finances if he/she becomes
more seriously ill
‫اُس کے زیادہ بیمار ہونے پر آپ پر پیسے‬
‫کے لحاظ سے دباؤ کی نوعیت۔‬
26 Dealing with psychiatrists
‫نفسیات کے ماہرین کے ساتھ معاملہ کرنا۔‬
27 His/her always being at the back of your mind
‫اُس کے ہمیشہ آپ کے ذہن پر سوار رہنا۔‬
28 Whether you have done something to make him

/her ill
‫کیا آپ نے کبھی ایسا کیا ہے جس کی وجہ‬
‫ہوگئی‬/‫سے وہ بیمار ہو گیا‬
29 How family members do not understand your
situation
‫خاندان کے دوسرے افراد آپ کی حالت کو‬
‫کیسے سمجھ نہیں پا رہے ہیں‬
30 How he/she thinks a lot about death
‫وہ کس طرح موت کے بارے میں بہت زیادہ‬
‫ سوچتا ہے‬/ ‫سوچتی‬
31 Her lost opportunities
‫ا ُ س نے جو موقعے گنوا دیے‬
32 How to deal with mental health professionals
‫ذہنی بیماریوں کے ماہرین سے کس طرح‬
‫معاملہ کریں‬
33 Feeling unable to have visitors at home
‫محسوس ہونا کہ گھر پر ملنے جلنے والے‬
‫نہیں آ رہے ہیں۔‬
Page 58
Appendices
34 How he/she gets on with other family members

‫وہ خاندان کے دوسرے افراد کے ساتھ کیسے‬
‫رہا ہے۔‬/ ‫چل رہی‬
35 Backing him/ her up when he/she runs out of
money
‫جب اُس کے پیسے ختم ہو جائیں اُس کی مدد‬
‫کرنا۔‬
36 How family members do not understand the
illness
‫خاندان کے افراد کس طرح بیماری کو نہیں‬
‫سمجھ پا رہے ہیں۔‬
37 How he/she deliberately attempts to harm
himself/herself
‫وہ کیسے جان بوجھ کو خود کو نقصان‬
‫رہی ہے۔‬/‫پہنچانے کی کوشش کر رہا‬
38 How health professionals do not understand

your situation
‫صحت کے ماہرین کس طرح آپ کی حالت‬
‫کو نہیں سمجھ رہے ہیں۔‬
39 Whether she will ever get well
‫کیا وہ کبھی تندرست ہوگی۔‬
40 Feeling the stigma of having a mentally ill
relative
‫رشتہ دار کا ذہنی مریض ہونے پر لوگوں کی‬
‫منفی سوچ کا احساس ہونا‬
41 How to explain his/her illness to others
‫اُس کی بیماری کی کس طرح دوسروں کو‬
‫وضاحت کی جائے۔‬
42 Others leaving home because of the effect of the
illness
‫بیماری کے اثر کی وجہ سے دوسرے لوگ‬
‫گھر چھوڑ کر جارہے ہیں۔‬
43 Setting him/her up in accommodation
‫اُسے رہائش گاہ میں ٹھہرانا‬
44 How to make complaints about his/her care
‫اُس کی نگہداشت کے بارے میں کیسے‬
‫شکایت درج کریں‬
45 Feeling unable to leave his/her home alone
‫اُس کو گھر پر اکیلے چھوڑنہیں پار ہا ہوں۔‬
46 The effect of the illness on children in the
family
‫بیماری کا خاندان کے بچوں پر اثر۔‬
47 The effect causing a family breakup
‫بیماری کا اثر خاندان کو توڑنے کی وجہ بن‬
‫رہا ہے‬
48 His/her keeping bad company
‫ا ُ س کا بری صحبت میں پڑنا‬
49 How his /her illness effects special family
events
‫اُس کی بیماری کس طرح خاندانی تقریبات پر‬
‫اثر انداز ہو رہی ہے۔‬
Page 59
Appendices
50 Finding out how hospitals or mental health

services work
‫دیکھنا کہ اسپتا ل اور ذہنی امراض کی‬
‫خدمات کیسے کام کرتی ہیں‬
51 Doctors knowledge of the services available to
families
‫خاندانوں کو میسر خدمات کی ڈاکٹروں کو‬
‫جانکاری‬
52 The difficulty getting information about his/her
illness
‫اُس کی بیماری کے بارے میں جانکاری‬
‫حاصل کرنے میں پیش آنے والی دشواری‬
53 Moody
‫سنجیدہ مزاج‬
54 Unpredictable
‫غیر متوقع‬
55 Withdrawn
‫واپس لیا گیا‬
56 Incommunicable
‫ناقابل ترسیل‬
57 Not interested
‫دلچسپی نہیں‬
58 Slow at doing things
‫کام کرنے میں سست‬
59 Unreliable about doing things
‫کام کرنے کے لیے نا قابل بھروسہ‬
60 Indecisive
‫فیصلہ نہ لینے کی حالت میں‬
61 Irritable
‫پریشان کرنے واال‬
62 Inconsiderable
‫نا قابل یقین‬
63 Behaving in a reckless way
‫غلط طریقہ سے برتاؤ کرنا‬
64 Suspicious
‫مشکوک‬
65 Embarrassing in appearance
‫دکھنے میں شرمندہ کرنے واال‬
66 Behaving in a strange way
‫اجنبی طریقے سے برتاؤ کرنے واال‬
Page 60
Appendices
APPENDIX D
World Health Organisation Quality of Life (WHO-QOL)
Very poor Poor Neither Poor Good Very good

‫بہت خراب‬ ‫خراب‬ nor good ‫اچھا‬ ‫بہت اچھا‬
‫نہ خراب نہ‬
‫اچھا‬
1 How would you rate your 1 2 3 4 5
quality of life?
‫آپ اپنی زندگی کے معیار‬
‫کو کیا درجہ دیں گے؟‬
Very Dissatisfied Neither Satisfied Very satisfied
dissatisfied ‫غیر اطمینان‬ satisfied nor ‫اطمینان‬ ‫بہت اطمینان‬
‫بہت غیر‬ ‫بخش‬
dissatisfied
‫بخش‬ ‫بخش‬
‫اطمینان بخش‬ ‫نہ ہی اطمینان‬
‫بخش نہ غیر‬
‫اطمینان بخش‬
2 How satisfied you are with 1 2 3 4 5
your health?
‫آپ اپنی صحت کے ساتھ‬
‫کتنے مطمئن ہیں؟‬
Not at all A little A moderate Very an extreme

‫قطعی نہیں‬ ‫تھوڑا سا‬ amount amount amount
‫بہت کم مقدار میں‬ ‫بہت مقدار‬ ‫بے حد مقدار‬
3 To what extent do you feel 1 2 3 4 5
physical pain prevents you
from doing what you need to
do?
‫آپ کو جو جسمانی درد محسوس ہوتا ہے وہ آپ‬
‫کو کس حد تک روکتا ہے اُس کام سے جو آپ‬
‫کو کرنے کی ضرورت ہے؟‬
4 How much do you need any 1 2 3 4 5
medical treatment to function
in your daily life?
‫آپ کو اپنی روز مرہ زندگی میں کام کرنے کے‬
‫لئے کس حد طبی عالج کی ضرورت پڑتی ہے؟‬
5 How much do you enjoy life? 1 2 3 4 5
‫آپ اپنی زندگی سے کس حد تک لطف‬
‫اندوزہوتے ہیں؟‬
6 To what extent do you feel 1 2 3 4 5
your life to be meaningful?
‫آپ اپنی زندگی کو کس حد تک بامعنی محسوس‬
‫کرتے ہیں؟‬
Not at all A little A moderate Very Extremely

‫قطعی نہیں‬ ‫تھوڑا‬ amount much ‫حد سے زیادہ‬
‫بہت کم مقدار میں‬ ‫بہت زیادہ‬
7 How well are you able to 1 2 3 4 5
concentrate?
‫آپ کتنی اچھی طرح توجہ مرکوز کر پاتے ہیں؟‬
8 How safe do you feel in your 1 2 3 4 5
daily life?
‫آپ اپنی روزمرہ کی زندگی میں خود کو کتنا‬
‫محفوظ محسوس کرتے ہیں‬
9 How healthy is your physical 1 2 3 4 5
environment?
‫آپ کا آس پاس کا مرئی ماحول کس حد تک‬
‫صحت مند ہے؟‬
Page 61
Appendices
Not at all A little Moderately Mostly Completely

‫قطعی نہیں‬ ‫زیادہ تر اعتدال میں تھوڑا‬ ‫پوری طرح‬
10 Do you have enough energy for 1 2 3 4 5
everyday life?
‫کیا آپ روزمرہ کی زندگی کے‬
‫لئے کافی توانائی رکھتے ہیں؟‬
11 Are you able to accept your bodily 1 2 3 4 5
appearance?
‫کیا آپ اپنے جسم کی ظاہری‬
‫شکل کو قبول کرپاتے ہیں؟‬
12 Have you enough money to meet 1 2 3 4 5
your needs?
‫کیا آپ کے پاس اپنی‬
‫ضروریات کو پورا کرنے کے‬
‫لئے کافی رقم ہے؟‬
13 How available to you is the 1 2 3 4 5
information that you need in your day
to day life?
‫آپ کو وہ جانکاری کتنی میسر‬
‫رہتی ہے جو آپ کو روزانہ‬
‫زندگی گزارنے کے لیے درکار‬
‫رہتی ہے؟‬
14 To what extent do you have the 1 2 3 4 5
opportunity for leisure time?
‫آپ کو کس حد تک تفریحی‬
‫وقت کا موقع میسر رہتا ہے؟‬
Very poor Poor Neither poor Good Very good
‫بہت خراب‬ ‫خراب‬ nor good ‫اچھا‬ ‫بہت اچھا‬
‫نہ خراب نہ‬
‫اچھا‬
15 How well you are able to get around? 1 2 3 4 5
‫آپ آس پاس گھومنے کی کتنی‬
‫صالحیت رکھتے ہیں؟‬
Very Dissatisf Neither Satisfied Very

dissatisfied ied satisfied nor ‫اطمینان‬ satisfied
‫بہت غیر‬ ‫غیر‬ dissatisfied
‫بخش‬ ‫بہت‬
‫اطمینان بخش‬ ‫اطمینان‬ ‫نہ ہی‬ ‫اطمینان‬
‫بخش‬ ‫اطمینان بخش‬ ‫بخش‬
‫نہ غیر‬
‫اطمینان بخش‬
16 How satisfied are you 1 2 3 4 5
with your sleep?
‫آپ اپنی نیند سے کتنا‬
‫مطمئن ہیں؟‬
with your ability to
perform your daily
living activities?
‫روزمرہ کی زندگی‬
‫گزارنے کے لیے آپ‬
‫خود میں موجود‬
‫صالحیت سے کتنے‬
‫مطمئن ہیں۔‬
Page 62
Appendices

capacity for work?
‫آپ خودمیں موجود‬
‫کام کرنے کی‬
‫صالحیت سے کتنا‬
with yourself?
‫آپ اپنے آپ سے کتنا‬
with your personal
relationships?
‫آپ اپنے ذاتی تعلقات‬
‫سے کتنا مطمئن ہیں؟‬
with your sex life?
‫آپ اپنی جنسی زندگی‬
‫سے کتنا مطمئن ہے؟‬
with the support you get
from your friends?
‫آپ اپنے دوستوں‬
‫سے ملنے معاونت‬
‫سے کتنے مطمئن‬
‫ہیں؟‬
with the conditions of
your living place?
‫آپ اپنی زندگی کے‬
‫حاالت سے کتنا‬
with your access to health
services?
‫صحت کی خدمات‬
‫تک رسائی سے آپ‬
‫کتنے مطمئن ہیں؟‬
with your transport?
‫آپ اپنے نقل و حمل‬
‫کے ذرائع سے کتنا‬
Never Seldom Quite often Very often Always

‫کبھی نہیں‬ ‫کبھی‬ ‫عام طور پر‬ ‫زیادہ تر‬ ‫ہمیشہ‬
‫کبھار‬
26 How often do you have 1 2 3 4 5
negative feelings such as
blue mood, despair,
anxiety, depression?
‫آپ کو کتنی جلدی‬
ً‫منفی احساسات مثال‬
‫جنسی خیاالت نا‬
‫ تشویش اور‬،‫اُمیدی‬
‫ذہنی دباؤ آتے ہیں؟‬
Page 63
Appendices
APPENDIX E
Scale Characteristics and Reliability Analysis of Zarit Burden interview (ZBI-

12)
Response Cronbach’s
Measure Items N M SD
Range alpha ()
Burden 12 0-4 100 21.71 8.49 .81
APPENDIX F
Scale Characteristics and Reliability Analysis of experience of caregiving

inventory (ECI)
Range alpha ()
Positive 14 0-4 100 36.93 9.04 .80
Experiences
Negative 52 0-4 100 100.66 22.52 .85

experiences
Page 64
Appendices
APPENDIX G
Scale Characteristics and Reliability Analysis of World Health Organisation

Quality of Life (WHO-QOL)
Range alpha ()
Physical
7 1-5 100 22.88 4.68 .76
Health
Psychological
6 1-5 100 19.27 4.35 .79
Health
Social
3 1-5 100 10.17 2.21 .67
Relationships
Environmental
Life 8 1-5 100 25.18 4.56 .71
Satisfaction
Total Quality
24 1-5 100 77.50 13.16 .89
of Life
Page 65

Research On Caregivers of Mental Illness People

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Research On Caregivers of Mental Illness People

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Relationship of Burden, Positive and Negative Experiences

and Quality Of Life among Caregivers of Psychiatric Patients

Project Report Submitted

Mudasir Majeed mir

Zarafshan Yousuf Khan

Rehana Rehman Bhat

Under the supervision of

Post Graduate Department of Psychology

Project Report Submitted

Mudasir Majeed mir

Zarafshan Yousuf Khan

Rehana Rehman Bhat

Supervisor Head of the Department

Post Graduate Department of Psychology

NAME ROLL NO. SIGNATURE

ZAHIDA FAYAZ BHAT 16079418009 ___________________________

MUDASIR MAJEED ___________________________

ZARAFSHAN YOUSUF ___________________________

REHANA REHMAN ___________________________

KAYINAT LATEEF 16079418042 ___________________________

Zahida Fayaz Bhat 16079418009

Zarafshaan Yousuf Khan 16079418026

Kayinat Lateef 16079418042

Dr. Shawkat Ahmad Shah Dr. Touseef Rizvi

Our sincere thanks to our teachers Dr.Humera Shafi, Dr.Muzamil Kumar,

We owe our sincere gratitude to all the respondents (caregivers of psychiatric

Zahida Fayaz Bhat

Zarafshaan Yousuf Khan

CHAPTER 2: Literature Review 15-22

CHAPTER 3: Methodology 23-26

CHAPTER 4: Result and Interpretation 27-32

Title of the Table Page No

Summary of Pearson’s correlation between Positive and

TABLE 5.3: Comparison of mean scores of Burden, Positive and

KEY WORDS: Burden, Positive Experiences, Negative Experiences and Quality

Mental disorders comprise a broad range of problems, with different symptoms.

friends. Sometimes caregiving is done by those affiliated with religious

Caregiving of patients with mental illness:

burden by caregivers, (Baldassano, Chen, Zadbood, Pillow, and Norman,

A number of factors related to caregivers, patients, and illness determine the

symptoms, others with disorganized or disruptive behavior or the negative

Objective burden is defined as the extent of disruption or changes in various

Caregiver Burden in the Context of Stress Theory

The importance of distinguishing between objective and subjective burden is

Caregiver Burden in the Context of Role Theory

Positive and Negative Experiences of Caregiving

described gains relating to companionship and simply being in the company of

Quality of life (QOL)

Quality of life (QOL) is defined as an individual’s perception of his position in the

The integrative Quality of Life Theory (IQOL)

Subjective Quality of Life

Existential Quality of Life

Objective Quality of Life

Abraham Maslow’s theory of Quality of Life

In 1962, Abraham Maslow published his book Towards a Psychology of Being,

Purpose of the Study

Objectives of the study

❖ To assess Burden, Positive and Negative Experiences and Quality of Life

❖ To study relationship between Burden and Quality of Life among caregivers

❖ To study relationship between Positive and Negative experiences and Quality

❖ To study difference in Burden, Positive and Negative experiences and Quality

Burden -.59 -.64 -.43 -.41 -.64**